Guest guest Posted January 14, 2001 Report Share Posted January 14, 2001 No discrimination events, but things you have to deal with. I'm sure that would be more than a chapter, though :-). When Nick was a baby he had to wear a patch over his good eye to try to strengthen his bad eye which wandered out because of his retinal hamartoma which made him not see much in that eye. Whenever we would go places people would stare at us. I guess they hadn't seen a baby with a patch over his eye before. Then he would keep trying to take the patch off. You can't explain to a baby it's for your own good (though I wonder if the thing even helped). We ended up getting him " infant no-no's " which were little arm braces. The doctor gave us a prescription for them and they made it so he could not bend him arms and take off his eye patch. We used the " infant no-no's " about one time and that was it. It felt too much like child abuse to make him wear them. I don't know who disliked the eye patch more Nick or us. Re: Re:Shunt? > > > > >Not only a complaint, how about a lawsuit for putting them in danger???? > > >I am so sick of rude people!!! Sorry, now I am spouting!! > > >Carol > > > > > >> na became ill on the bus and the bus driver kicked them off the bus half > > way home in the middle of nowhere. The bus driver was quite rude to them and > > I felt it was wrong for them to be treated in such a manner. I am > > considering filing some sort of complaint or > > >> lawsuit because of the drivers insensitivity and the regional > > transportation has a habit of treating the handicap disgracefully. Karina > > ended going by ambulance to the hospital and was quite traumatized. I am > > thankful her friend was with her and that there wasn't snow on the ground > > because Karina told me she was lying on the sidewalk and it was quite cold > > but she couldn't get up. The doctor at the hospital said her tegretol levels > > were really. We haven't figured out what made > > >> them so high but her liver and cholesterol was high too. > > >> from CO and we don't have snow yet. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2001 Report Share Posted January 14, 2001 No discrimination events, but things you have to deal with. I'm sure that would be more than a chapter, though :-). When Nick was a baby he had to wear a patch over his good eye to try to strengthen his bad eye which wandered out because of his retinal hamartoma which made him not see much in that eye. Whenever we would go places people would stare at us. I guess they hadn't seen a baby with a patch over his eye before. Then he would keep trying to take the patch off. You can't explain to a baby it's for your own good (though I wonder if the thing even helped). We ended up getting him " infant no-no's " which were little arm braces. The doctor gave us a prescription for them and they made it so he could not bend him arms and take off his eye patch. We used the " infant no-no's " about one time and that was it. It felt too much like child abuse to make him wear them. I don't know who disliked the eye patch more Nick or us. Re: Re:Shunt? > > > > >Not only a complaint, how about a lawsuit for putting them in danger???? > > >I am so sick of rude people!!! Sorry, now I am spouting!! > > >Carol > > > > > >> na became ill on the bus and the bus driver kicked them off the bus half > > way home in the middle of nowhere. The bus driver was quite rude to them and > > I felt it was wrong for them to be treated in such a manner. I am > > considering filing some sort of complaint or > > >> lawsuit because of the drivers insensitivity and the regional > > transportation has a habit of treating the handicap disgracefully. Karina > > ended going by ambulance to the hospital and was quite traumatized. I am > > thankful her friend was with her and that there wasn't snow on the ground > > because Karina told me she was lying on the sidewalk and it was quite cold > > but she couldn't get up. The doctor at the hospital said her tegretol levels > > were really. We haven't figured out what made > > >> them so high but her liver and cholesterol was high too. > > >> from CO and we don't have snow yet. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2001 Report Share Posted January 14, 2001 - Thanks for sharing. That is a sad story about the arm braces. As a parent I don't believe I could have force my child to wear them either. Jane Re: Re:Shunt? >No discrimination events, but things you have to deal with. I'm sure that >would be more than a chapter, though :-). When Nick was a baby he had to >wear a patch over his good eye to try to strengthen his bad eye which >wandered out because of his retinal hamartoma which made him not see much in >that eye. Whenever we would go places people would stare at us. I guess >they hadn't seen a baby with a patch over his eye before. Then he would >keep trying to take the patch off. You can't explain to a baby it's for >your own good (though I wonder if the thing even helped). We ended up >getting him " infant no-no's " which were little arm braces. The doctor gave >us a prescription for them and they made it so he could not bend him arms >and take off his eye patch. We used the " infant no-no's " about one time and >that was it. It felt too much like child abuse to make him wear them. I >don't know who disliked the eye patch more Nick or us. > > Re: Re:Shunt? >> > >> > >Not only a complaint, how about a lawsuit for putting them in >danger???? >> > >I am so sick of rude people!!! Sorry, now I am spouting!! >> > >Carol >> > > >> > >> na became ill on the bus and the bus driver kicked them off the bus >half >> > way home in the middle of nowhere. The bus driver was quite rude to them >and >> > I felt it was wrong for them to be treated in such a manner. I am >> > considering filing some sort of complaint or >> > >> lawsuit because of the drivers insensitivity and the regional >> > transportation has a habit of treating the handicap disgracefully. >Karina >> > ended going by ambulance to the hospital and was quite traumatized. I am >> > thankful her friend was with her and that there wasn't snow on the >ground >> > because Karina told me she was lying on the sidewalk and it was quite >cold >> > but she couldn't get up. The doctor at the hospital said her tegretol >levels >> > were really. We haven't figured out what made >> > >> them so high but her liver and cholesterol was high too. >> > >> from CO and we don't have snow yet. >> > > >> > > >> > > >> > > >> >> >> >> >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2001 Report Share Posted January 14, 2001 - Thanks for sharing. That is a sad story about the arm braces. As a parent I don't believe I could have force my child to wear them either. Jane Re: Re:Shunt? >No discrimination events, but things you have to deal with. I'm sure that >would be more than a chapter, though :-). When Nick was a baby he had to >wear a patch over his good eye to try to strengthen his bad eye which >wandered out because of his retinal hamartoma which made him not see much in >that eye. Whenever we would go places people would stare at us. I guess >they hadn't seen a baby with a patch over his eye before. Then he would >keep trying to take the patch off. You can't explain to a baby it's for >your own good (though I wonder if the thing even helped). We ended up >getting him " infant no-no's " which were little arm braces. The doctor gave >us a prescription for them and they made it so he could not bend him arms >and take off his eye patch. We used the " infant no-no's " about one time and >that was it. It felt too much like child abuse to make him wear them. I >don't know who disliked the eye patch more Nick or us. > > Re: Re:Shunt? >> > >> > >Not only a complaint, how about a lawsuit for putting them in >danger???? >> > >I am so sick of rude people!!! Sorry, now I am spouting!! >> > >Carol >> > > >> > >> na became ill on the bus and the bus driver kicked them off the bus >half >> > way home in the middle of nowhere. The bus driver was quite rude to them >and >> > I felt it was wrong for them to be treated in such a manner. I am >> > considering filing some sort of complaint or >> > >> lawsuit because of the drivers insensitivity and the regional >> > transportation has a habit of treating the handicap disgracefully. >Karina >> > ended going by ambulance to the hospital and was quite traumatized. I am >> > thankful her friend was with her and that there wasn't snow on the >ground >> > because Karina told me she was lying on the sidewalk and it was quite >cold >> > but she couldn't get up. The doctor at the hospital said her tegretol >levels >> > were really. We haven't figured out what made >> > >> them so high but her liver and cholesterol was high too. >> > >> from CO and we don't have snow yet. >> > > >> > > >> > > >> > > >> >> >> >> >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2001 Report Share Posted January 14, 2001 - Thanks for sharing. That is a sad story about the arm braces. As a parent I don't believe I could have force my child to wear them either. Jane Re: Re:Shunt? >No discrimination events, but things you have to deal with. I'm sure that >would be more than a chapter, though :-). When Nick was a baby he had to >wear a patch over his good eye to try to strengthen his bad eye which >wandered out because of his retinal hamartoma which made him not see much in >that eye. Whenever we would go places people would stare at us. I guess >they hadn't seen a baby with a patch over his eye before. Then he would >keep trying to take the patch off. You can't explain to a baby it's for >your own good (though I wonder if the thing even helped). We ended up >getting him " infant no-no's " which were little arm braces. The doctor gave >us a prescription for them and they made it so he could not bend him arms >and take off his eye patch. We used the " infant no-no's " about one time and >that was it. It felt too much like child abuse to make him wear them. I >don't know who disliked the eye patch more Nick or us. > > Re: Re:Shunt? >> > >> > >Not only a complaint, how about a lawsuit for putting them in >danger???? >> > >I am so sick of rude people!!! Sorry, now I am spouting!! >> > >Carol >> > > >> > >> na became ill on the bus and the bus driver kicked them off the bus >half >> > way home in the middle of nowhere. The bus driver was quite rude to them >and >> > I felt it was wrong for them to be treated in such a manner. I am >> > considering filing some sort of complaint or >> > >> lawsuit because of the drivers insensitivity and the regional >> > transportation has a habit of treating the handicap disgracefully. >Karina >> > ended going by ambulance to the hospital and was quite traumatized. I am >> > thankful her friend was with her and that there wasn't snow on the >ground >> > because Karina told me she was lying on the sidewalk and it was quite >cold >> > but she couldn't get up. The doctor at the hospital said her tegretol >levels >> > were really. We haven't figured out what made >> > >> them so high but her liver and cholesterol was high too. >> > >> from CO and we don't have snow yet. >> > > >> > > >> > > >> > > >> >> >> >> >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 First of all, I apologize that this is a delayed response =) This is my first time actually responding to an email on the list-serve because shunts are about the one thing I can really offer valuable information on, but I'm a great listener and I've been learning so much from all of you since I joined in September - thanks! I had a shunt put in in the Fall of 1999, before I knew I had nf2, because of intracranial hypertension which was so bad I had lost my vision temporarily, very scary, and my eyes were extremely swollen, hurt like hell. When I had the shunt placed, I actually experienced low pressure headaches and a lot of dizziness, my body adjusting to the difference in pressure. About a month after the surgery I felt better than ever, but I've had to have two revisions since then because the darn things can get blocked. My neurosurgeon calls the revisions 'upgrading my equipment' =) But it has definitely been worth not having the headaches and swirling sounds in my hears! I wish a all the best! Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 Thanks for the info . The pressure in my head is one of the things I need to talk about tomorrow with my neuro. You guys have given me some good ammo. Hugs, Carol p.s. You did good posting!!! MacKenzie wrote: > > > > > First of all, I apologize that this is a delayed response =) This is > my first time actually responding to an email on the list-serve > because shunts are about the one thing I can really offer valuable > information on, but I'm a great listener and I've been learning so > much from all of you since I joined in September - thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 I'm withJen; I have had a shunt since 1975; works fine and saved my life. Marie Re: Re:Shunt? >> Karina may need surgery soon too. Since her AN surgery in Sept. she has >had terrible headaches and so they are thinking she may need a shunt. Did >anyone else have this problem? Does it help relieve the pain? > >I had a VP shunt placed several weeks after an A.N. surgery I was making a >very slow recovery after the a.n. surgery, very sick, dizzy and throwing up >alot. My mom finally took me back to the hospital and I guess right there >in the emergency room I passed out. The next thing I knew I woke with a >shunt in place. I immediately felt alot better, and almost 20 years later >it's still doing its job, never a problem with it I have no idea it's even >there except I can feel the bump of the tube behind my ear and on my neck a >little. Oh... and I can also see it on my MRI. It's > >Jennette > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 I'm withJen; I have had a shunt since 1975; works fine and saved my life. Marie Re: Re:Shunt? >> Karina may need surgery soon too. Since her AN surgery in Sept. she has >had terrible headaches and so they are thinking she may need a shunt. Did >anyone else have this problem? Does it help relieve the pain? > >I had a VP shunt placed several weeks after an A.N. surgery I was making a >very slow recovery after the a.n. surgery, very sick, dizzy and throwing up >alot. My mom finally took me back to the hospital and I guess right there >in the emergency room I passed out. The next thing I knew I woke with a >shunt in place. I immediately felt alot better, and almost 20 years later >it's still doing its job, never a problem with it I have no idea it's even >there except I can feel the bump of the tube behind my ear and on my neck a >little. Oh... and I can also see it on my MRI. It's > >Jennette > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 I'm withJen; I have had a shunt since 1975; works fine and saved my life. Marie Re: Re:Shunt? >> Karina may need surgery soon too. Since her AN surgery in Sept. she has >had terrible headaches and so they are thinking she may need a shunt. Did >anyone else have this problem? Does it help relieve the pain? > >I had a VP shunt placed several weeks after an A.N. surgery I was making a >very slow recovery after the a.n. surgery, very sick, dizzy and throwing up >alot. My mom finally took me back to the hospital and I guess right there >in the emergency room I passed out. The next thing I knew I woke with a >shunt in place. I immediately felt alot better, and almost 20 years later >it's still doing its job, never a problem with it I have no idea it's even >there except I can feel the bump of the tube behind my ear and on my neck a >little. Oh... and I can also see it on my MRI. It's > >Jennette > > > > > Quote Link to comment Share on other sites More sharing options...
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